Two years on ...

[Lady4]

Early study leave and School holidays have been a breath of fresh air and I have learn't a lot over the past two years from you guys, Re-Active and from "looking for answers".

Both my sons initial diagnosis's, first (Chronic Regional Pain Syndrome) following Paeds appt, second I found out in a back to front way about FND, as it was only mentioned on Drs letter (not ours - physio picked up on it), we were just given letters with a few typed paragraphs and website to refer to.

Considering all that he went through, "the boy did well" and I am super proud and 6th form awaits, with his chosen courses.

When I look back at my re-actions/actions, I think I actually enabled his brain, letting him stay off school etc, so this term I need to be stronger and do things differently.

[210272]

Lady4 I think you've done a great job with your son and we're all doing the best we can with the light we can see by at the time. They need to tell people the diagnosis during the consultations rather than hide it in the notes and they need to give the 'rule in' signs used to make the diagnosis too. In the UK a woman *was* told the diagnosis (during a 3 minute conversation with a neurologist in a corridor) and then told to 'google it' when she asked for further information about this condition. That's equally unacceptable.

Wishing you and your son all the best for the rest of the Summer (if we can call it that, what with all the storms) and for his time in 6th form

[Lady4 in reply to 210272]

Thanks, I thought I would spread a bit of hope.

[Shimmyaway in reply to Lady4]

Glad to hear of the salutary results of your considerable efforts to get your son back from the clutches of FND.

[Lady4 in reply to Shimmyaway]

Thanks Shimmyaway.

[Shimmyaway in reply to Lady4]

An interesting article promoting better treatment of adolescents with FND.. more recognition of the problem in educ establishments might help too!

doi.org/10.1016/j.ebr.2021....

[Lady4 in reply to Shimmyaway]

Yes definately, and the multi-disciplinary collaborative approach should be applied to adults too and early invention a must as a gamechanger.

Notice article was a few years back, lets hope the Educational to Professionals is filtering through.

Also this sentence stood out to me under maladaptive behaviours:

"An exclusively negative focus regarding the future, coupled with the inability to be in the present and to celebrate progress in the here and now."

So that needs to be reversed: lets celebrate the progress, all the little "wins" and try be in the present. We can't change whats happened before but we can shape our future.

[Poseypink]

I’m so happy to hear that your son has improved, Lady4 …you’ve done a great job with him…and we have all learned quite a bit from you and your tireless research! You’ve helped me too! so thank you!

[Lady4 in reply to Poseypink]

Thanks. Your welcome, I'll still continue to help if I can. Only this morning I was reading an article sent via email from re-active (just got last bit to read). I found the last table good advice for medical professionals.